Shifting perspective on IBS - ScienceNordic article

[Gabes-Apg]

There are reliable tests for metals - blood and hair testing

There are also some tests to test for certain types of bacteria and parasites linked to mould and biotoxins
it is not 'black and white' and not always covered by mainstream medicine
http://www.toxic-black-mold-syndrome.co ... DTEST.html

there are also tests for some chemicals/fertilisers - you would have to investigate options based on where you live.
ie find a local functional doctor/practitioner that can access the ordering of these tests.


treatment wise - clean low inflammation eating plan, minimising contact with various toxins etc

chelation protocol for clearing excess metals is things like MOlybdenum, magnesium, Vit C, Vit E

cholestryamine is the main treatment protocol for biotoxins linked to mould

basic research into clearing chemicals is along same lines as clearing metals, good methylation / detox system, healthy gut, the right nutrients in the cells, like magnesium, molybdenum, Vit C, Vit E etc.

time in nature, away from pollution, power lines, EMF etc

other detox protocols like epsom salt baths, saunas, massage, ozone therapy etc
http://drlwilson.com/detox_protocols.htm

[Gabes-Apg]

Holly
some good starting points for reading/learning about testing and treatment

http://www.survivingmold.com/diagnosis
http://comingbacktopeace.blogspot.com.a ... asics.html

from my 9 months or so of reading / researching it is a bit like chronic MC, no one thing will resolve the symptoms
the people that have the most success in overcoming these issues
- stick to a strict low inflammation, body healing eating plan
- make lifestyle changes - be it career, where they live, relaxation, wellness detox activities
- optimise cell health
- time... there is no quick fix

this article presents some good timeline aspects regarding success of treatment protocols for this type of thing - that it takes a combo of inputs. for some it is a 12 month journey, for other 5 years.
https://willtherebecake.org/2015/11/11/ ... nal-study/

Please keep in mind, a bit like MC world, we can not do everything perfectly. We cant avoid every possible trigger. (and I have seen some people in the biotoxins groups get very OCD about various aspects of life)
wellness (physical wellness, emotional wellness and mental wellness - all three) comes when we find the balance, about being proactive about minimizing triggers (or managing our contact with them), find and stay with a low inflammation, gut healing enjoyable eating plan, lifestyle choices that support this journey, take the supplements that work for each individual and support that individuals needs, where needbe use medications that provide more benefit than issue to support us, and enjoy life, with fulfillment, contentment, what ever that may be for each individual...

[Polly]

Hi Erica!

I also have my gallbladder (GB) and have never had any GB or liver problems. In fact, the majority of BAM cases do NOT have a GB problem or any obvious problem with the terminal ileum, like Crohn's or previous surgery. Acidic D is one of the symptoms. And it does make the bum burn! Do you ever see green or yellow-colored water (or stools) in the toilet? The D can also wake you up at night at times. I had treated my LC with diet for YEARS but could never seem to get the really good control that others talked about.
That is, until I tried the cholestyramine (bile binder). Ask your doc for a trial....it's safe (not systemically absorbed) and cheap.......it's the only way to diagnose BAM.

Hi Holly,

There is no test for BAM in the U.S., although there is one readily available in the U.K. That's why the majority of members of the BAM Facebook support group are from the UK - it is diagnosed much more frequently there. The way to diagnose it here in the U.S. is very simple - a trial of a bile binder (cholestyramine, cholestid, or Welchol). Your doc can easily give you a prescription.....the cholestyramine is the "oldest" one and is quite cheap. It can take up to a month to see a full effect, so that is one of the reasons people sometimes think it doesn't work. And it needs to be titrated.....you may need to tweak it by adding or subtracting a dose as you see how it affects you. It can be a lifesaver!!!!!!!

I became aware of the issue of similar diseases in dogs. Some years ago I had met a poodle who was diagnosed with MC and was put on a grain-free diet as well as budenoside! Makes sense when you figure that the wolf (the precursor of all dogs today) has no grains in its diet. BTW, I am one who has found that I do best when I eat no grains at all (I guess my paleo genes are pretty strong - giggle).

My GI says that cholestyramine is very good at removing toxins from the body, too, so that is another advantage, especially for someone like you who has known exposures to toxins. My thinking is that the common denominator in most of the GI conditions is gut dysbiosis.....IOW, the balance of gut organisms is out of whack. So....certain bacteria may be releasing toxins that damage the gut.....the good news is that they can be removed by the binder med. to decrease inflammation.

Love,

Polly

[Erica P-G]

Thanks Polly!
I am going to request that and see if I can work at this MC a bit more. I see the yellow once in a while....and if I had a 2a.m. episode last night hate it when it wakes you from a dead sleep, I feel so rummy making my way to the bathroom, but then after that episode my gut simmers way down and I can sleep. Haven't had that happen to me in quite a long time. I do know I have been at this healing pretty seriously for over a year now and feel it can't hurt to try the cholestyramine (even though I think I remember it from early Rx before my colonoscopy days and it was a bit gritty...hrmph). Maybe there is a type of cholestyramine that isn't such a texture gagger. I'm not seeing the good results that I hear and read from others and from all the changes I have been making this last year....so perhaps this could be helpful. There was a time middle last Winter between Thanksgiving and Christmas where 6-7 months healing was a good period for me, beyond that has been sketchy.

Appreciate your response!
Hugs
Erica

[Gabes-Apg]

Erica,
yes, the powder can be a bit gritty
I know some people that get Cholestyramine put into a capsule via a compounding pharmacy.

the other aspect Erica, as you improved your magnesium levels, B group levels and fixed methylation issues, your body would have resumed detoxing/clearing metals etc this would maybe be the main reason, or a reasonable contributor to you not feeling top of the world.

[TaiaK]

Erica-I can relate to your experience.

I am thinking of giving the cholestryamine another shot. I got a script from my PCP in Feb and tried it for a month. I remember it settled my stomach and I went a bit less but the consistency of my BM's never got better so I stopped-perhaps too soon, perhaps I didn't use enough or maybe it's not for me. Can't hurt. I put it in a glass jelly jar, shook it and used a straw-wasn't too bad.

So maybe this or the VSL 3. I'll have to decide. Good luck on whatever you decide!

Taia

[dfpowell]

Erica,

I started the cholestyramine a year ago when Polly first mentioned her success with it. I use the Sandoz powder, 1 scoop 2x/day, several months ago I tried a pill form, Cholestid, but did not get as good of a response. For me cholestryamine has reduced my MC symptoms but has made me 100% free of symptoms. I still get flares but they are not as severe and don't last as long. It is gritty but I don't mind the taste.

When I first started the cholestyramine, I was able to add more food into my diet, however over time I was not getting as much control of my symptoms. So I am currently following the AIP diet and doing much better, my goal is to try lowering the dose of cholestryamine as I am concerned about longterm use and that it may interfere with vitamin and mineral absorption.

[Erica P-G]

Thanks Donna,
That's good info to know I will probably always be looking for this an that in this MC world we all live in. I'm not sure I want to add much food into my diet persay, I would just like to feel consistency a bit more, and like Gabes says I potentially am going thru more clearing of toxin...it took a long while to get to this point there's no reason for it to not take a good long stretch before I can say I am going great guns as I was in my 20 and 30's (although in my latter 30's in 2004 I must have been gearing up for this MC to appear because a trip to Denmark was a rude of wakening at the Hans Christensen Anderson home museum because I had to use the restroom urgently and I didn't understand why at the time, now I am putting the pieces together).

I understand that if I do attempt this as a helping hand to all that's going on there are rules to when you take it due to it binding to supplements. I'll have to poke around and read up on how others have dealt with it. I'm thinking once a day for me will be enough to notice, and then I'll adjust from there. My body seems to take to things rather quickly so have not had to have a very large dose of anything, guess that can be a good thing.

[hollyweb]

Thank you so much, Gabes, Polly, Erica and everyone, for your very informative posts! This forum is such a lifeline for knowledge, support and education. Thank you!

I've got a call in to my GI doctor for the cholestyramine; we'll see what he says. If he doesn't prescribe me a month's trial, it's good to know that I could potentially ask my PCP for the script. Sounds like it's well worth a try, and I appreciate hearing more about it.

Will keep you posted! Just got my EnteroLab results back, so will likely post those and some questions about them in another area.

Another symptom I've been having is lots of itchiness of the skin, top to toe! Rash on inner arms at elbow, actually rash a lot of places, including scalp! At first, I thought it was due to the magnesium oil, but now I'm thinking possibly it's more due to the mast cell / histamine problem? I already take 1 antihistamine a day, and per previous threads have increased that to 2 a day. It does help, and now I also know from my labs that some of the main foods I've been eating/counting on are 3+, yikes! My naturopathic doctor can tell by looking at me that I'm filled with inflammation, and I look/feel very bloated (although I'm dehydrated and fortunately have no D).

Quick question ... I read the thread about the difference between Histame and antihistamines. Can you take both? Or if you try the Histame, should you stop the antihistamines so you'll be able to determine how much to take, if it's helping, etc.?

Another quick question, and I believe Erica mentions it too ... if you add in Cholestyramine (or Histame), is there anything you should take out (or be aware of) from your supplement / eating plan?

With much gratitude,
~ Holly

[hollyweb]

It appears Histame is not supposed to be used / helpful for people with auto-immune disorders or gluten sensitivity. Is this a case where the medical community isn't putting the mast cell part of MC in effect? IE, the board has already been so helpful to me providing insight so that I started taking antihistamines, and my MC symptoms are greatly improved.

I also take pancreatic /digestive enzymes for fat (and I'm sure other) malabsorption issues, and I'm wondering if I were to take the Histame, would I take it in addition to the enzymes? And am still wondering about taking histame in addition to / or instead of the antihistamines.

That brings up a point too about the Cholestyramine ... maybe if I only took the lowest dose it could be helpful, without causing more malabsorption problems?

Thank you for your patience!

~ Holly

[armstrongpilot]

When my stool is in toilet...a dark yellow liquid leeches out of it and hangs at bottom of toilet...is that bam? Could that be a big part of.my issues? I see it everytime..

[Erica P-G]

I believe it is exactly that armstrong, as I see this also a little more than I care to. If you were taking loads of Vit B's then I'd say maybe we were passing lots of B's in the urine....but I'm finding I'm not taking that much B and only in the morning and I am still seeing the yellow in the late afternoon.

I haven't been okay'd yet for the sand, hoping I don't have to go to a second Dr. just to ask for this script

[tex]

Holly,

You definitely described a mast cell/histamine problem. I'm not an authority on Histame, and it's possible that I might have missed something or forgotten, but I can't recall anyone here posting that it actually seemed to be helping.

Those of us who have mast cell/histamine typically have to minimize high-histamine foods in our diet. Unless I'm thinking of someone else, I seem to recall that you mentioned tea in another post. I have to avoid tea because it is one of the foods that interferes with the action of diamine oxidase enzyme (DAO). DAO is the main tool that the body uses to purge excess/unused histamine from the system. When DAO functioning is compromised, histamine continues to build up in circulation, causing or increasing histamine related symptoms. I have to avoid chocolate also, because of histamine issues.

Tex

[hollyweb]

Hi, Tex! Thank you for your response. The post I'm remembering about the Histame was more about describing the difference between the Histame (which contains the naturally occurring DAO in the body) and antihistamines (which are considered medications). Unless I got that wrong! I do seem to recall people inquiring about the Histame, and giving sources to buy it ... so I'm thinking it must be helpful to some?? Meanwhile, I also remember your posts that you can take even more antihistamine per day (up to 6? is that right?) during really symptomatic times, so perhaps I should even go to 3 a day while removing more of my problem foods and TEA!!

Yes, I have been drinking tea, 3-4 cups a day, and only started since developing MC symptoms. The reason was because I was told by my ND that drinking a hot liquid with hot lemon juice right after meals aids digestion, reduces acid in the stomach and helps convert bad cholesterol to good. Since the foods I can eat are so limited, hot tea has become quite a comfort to me and something I enjoy. I'm so glad you posted about the histamine connection to it as I likely wouldn't have put those pieces together. I used to be a coffee drinker, especially loved the cafe mochas. But black coffee doesn't agree with me now, and I'm too afraid to try any types of milks to put with it. Almonds are a 3+ trigger for me, and while coconut hasn't been tested, I know from experience that I have a reaction to all forms of it.

Is there any form of tea that doesn't cause that DAO interference? Is it specific to tea, not to caffeine or caffeinated tea? And, do you have any other ideas what in the world to drink??

Tomorrow I'll likely be throwing out all my frozen chicken, and all my boxes of teas, assuming my neighbor doesn't want them. I know everyone here goes through this. It feels so wasteful, so expensive, and sometimes, there seems nothing else left that is okay to eat or drink what with juggling gluten, dairy, soy, egg and nightshade free, 3+ EnteroLab free, high histamine foods, little fiber and other food sensitivities.

Again, thank you for your feedback, and please excuse the whining. I'd so much rather be informed so I can continue those baby steps forward. Tomorrow is another day!

~ Holly

[tex]

Hi Holly,

It's not the number of antihistamines (or the number of antihistamine pills) that matter — it's the labeled dose for the respective antihistamines being used. Allergists prescribe up to 4 times the labeled dose to treat otherwise unresponsive urticaria issues such as systemic mastocytosis. Be careful when using off-label treatments such as this though, because case studies show that somewhere around 10 times the labeled dose may be fatal.

As far as I am aware, only black tea, green tea, maté tea, alcohol, and energy drinks block DAO. Apparently something besides caffeine is responsible for the DAO interference, because coffee is not generally recognized as a DAO blocker.

Coffee is a monoamine oxidase inhibitor, which makes it somewhat protective against Parkinson's disease, but again, this not an effect of caffeine, but other compounds in the coffee.

The first steps are always the most difficult. It gets easier as we begin to be rewarded for our efforts.

You're very welcome,
Tex